During July, we invited a group of parents of children with additional support needs to meet and discuss the support they receive currently in East Renfrewshire and where we might focus our efforts going forward to improve support in the future. The parents who came along had sons and daughters of all ages, from pre-school age to young adults who have left secondary school.

It was a lively and wide-ranging discussion and we hope it was useful for parents to get together with other parents and share experiences, advice, ideas and contacts.

There were some things everyone seemed to agree were important:

Transparency – being open and transparent about how the system works, what support is available and how to get it.

Fairness – people want to be treated fairly and equally, regardless of individual circumstances.

Consistent, accurate, accessible information – being able to get access to information when you needed it, all in one place, would make life a lot easier.

Choice and control – being able to make informed decisions about what would be most helpful for you. Having choice and control over support arrangements.

Appropriate support at transitions and beyond your child’s time at school.

We talked through parents’ experiences at dierent stages, from their child’s birth, when they first had concerns about their child, diagnosis, pre-school, primary school, secondary school and transition from school.

Everyone talked about their own experiences and their concerns for what was best for their sons and daughters. When we asked what support was available for parents at each stage, everyone chorused, “None!”

So, where might we focus attention to make the most difference and make parents of children with additional needs feel better supported?

We walked along the path of a child growing-up to identify the points where support for families could be improved. We’ve captured the essence of what people said along the way to illustrate the themes.